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Where can I be involved in Long COVID advocacy?

By January 30, 2023May 11th, 2023Advocacy Resources

Longtime LCA member and Long COVID advocate Cynthia Adinig shares this about the Alliance and our core partners:

Sometime during your long COVID journey, you may want to get involved in advocacy. However, there’s a lot of advocacy groups and organizations that formed recently. Here is my list of some groups to get started with.

Solve M.E. 

Solve M.E., a non-profit that launched the Solve Long Covid Initiative, has served as a catalyst for critical research into post-infection diseases for decades. The global pandemic has given rise to the latest widespread post-infection disease, Long Covid. In response to this devastating health crisis, Solve M.E. has initiated important Long Covid efforts with the scientific, medical,  communities, advocacy with government agencies, and alliances with patient groups around the world. SOLVE M.E. is the oldest organization in the Long COVID advocacy. Originally focusing solely on MECFS, but seeing the need and similarities with long COVID. SolveME expanded its mission to include more chronic illnesses. The most notable staff includes Oved Amitay, and Emily Taylor.  I am also a board member of SolveME.  To visit the Solve website click the button below.

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Long Covid Alliance

In 2020, 21 science, post-viral disease and patient advocacy organizations came together to spurn government investment for Long COVID research. This effort eventually created the Long COVID Alliance. Long Covid alliance has been amazing at the advocacy, awareness, education and patient stories side of advocacy. The most prominent core members in the alliance include Oved AmitayEmily Taylor,  Karyn Bishof Hunter Howard and more includingmyself.  To visit the Long Covid Alliance website, click the button below. 

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Covid Long Hauler Advocacy Project

The Covid-19 Longhauler Advocacy Project was founded by Karyn Bishof, a Longhauler who has been ill since infection in March of 2020. Karyn is also a co-founder of Long Covid Alliance. She took up advocacy work for Longhaulers because she realized early on that Longhaulers were not being advocated for properly. Their mission is advocacy, education and support. They advocate for legislation to protect and help longhaulers. CL-10 LAP wrote an Open Letter to Biden concerning creating of safety net programs for those with long COVID. To visit the website click here.  For more information about the Facebook support group, click the button below.

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Body Politic

Body Politic is a fantastic advocacy resource for long haulers. Body Politic was founded as a queer feminist wellness collective in 2018. Two years later, founder Fiona Lowenstein became a long hauler so Body Politic created a Long Covid support group housed on Slack app that now has over 10,000 members. Aside from Fiona, one of their most prominent members in advocacy is Chimére Smith. one of MSNBC, CNN, PBS and more. They have been featured on MSNBC, CNN, PBS and more. Chimére Smith has even given a speech about long COVID in front of congress.  To visit the Body Politic website, click the button below. 

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#MEAction is an international organization that works to develop and support a global network of individual ME advocates. When the pandemic began, they sounded the alarm: acute viral infection leads to chronic illness in a significant number of individuals. Several studies are now showing that nearly half of people with Long COVID have ME/CFS. Their goal is to ensure that everyone can easily access the information they need to make the best possible decisions for the health of their families, patients, and for their own well-being. #MEAction is known for their protests that highlight chronic illness. Jennifer Brea is a co-founder of #MEAction, American documentary filmmaker and activist. To visit the #MEAction website, click the button below. 

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Pandemic Patients

Pandemic Patients a 501(c)(3) non-profit patient advocacy organization with one mission: To relieve the harm caused by COVID-19 and Post-COVID Conditions. Andrew Wylam is the President and co-founder of Pandemic Patients. As a lawyer with an extensive background in patient advocacy and government relations, Andrew guides the organization in its engagement with policymakers and the public to provide support and services to people affected by COVID-19. They are working to ensure that those affected by COVID-19 receive the support and services they need to live their best lives. Pandemic Patients also has easy to ready long COVID data. Most notably they provide legal services for longhaulers. A service very few other organizations provide. To visit the Pandemic Patients website, click the button below. 

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